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Enhancing multi‐site autism research through the development of a collaborative data platform

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Titel: Enhancing multi‐site autism research through the development of a collaborative data platform
Autoren: Jeffrey T. Anderson, Jeffrey D. Roth, Kashia A. Rosenau, Patrick S. Dwyer, Alice A. Kuo, Julian A. Martinez‐Agosto
Quelle: Autism Research. 17:1322-1327
Verlagsinformationen: Wiley, 2024.
Publikationsjahr: 2024
Schlagwörter: 0301 basic medicine, Biomedical Research, Psychological methodology, design and analysis, Data Collection, FOS: Clinical medicine, Neurosciences, Applied and developmental psychology, 16. Peace & justice, Clinical and health psychology, 3. Good health, FOS: Psychology, 03 medical and health sciences, 0302 clinical medicine, Humans, Psychology, Autistic Disorder, Cooperative Behavior
Beschreibung: Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR‐P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter‐site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three‐tiered framework consisting of (1) a request for proposals system, (2) a REDCap‐based data repository, and (3) public data dashboards to display aggregate de‐identified data. Coupled with a review process including autistic and non‐autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people.
Publikationsart: Article
Other literature type
Sprache: English
ISSN: 1939-3806
1939-3792
DOI: 10.1002/aur.3167
DOI: 10.26181/26707669.v1
DOI: 10.26181/26707669
Zugangs-URL: https://pubmed.ncbi.nlm.nih.gov/38794841
Rights: CC BY NC ND
Dokumentencode: edsair.doi.dedup.....2d097ee1e9eea6b0a07f5f390514610c
Datenbank: OpenAIRE
Beschreibung
Abstract:Data repositories, particularly those storing data on vulnerable populations, increasingly need to carefully consider not only what data is being collected, but how it will be used. As such, the Autism Intervention Research Network on Physical Health (AIR‐P) has created the Infrastructure for Collaborative Research (ICR) to establish standards on data collection practices in Autism repositories. The ICR will strive to encourage inter‐site collaboration, amplify autistic voices, and widen accessibility to data. The ICR is staged as a three‐tiered framework consisting of (1) a request for proposals system, (2) a REDCap‐based data repository, and (3) public data dashboards to display aggregate de‐identified data. Coupled with a review process including autistic and non‐autistic researchers, this framework aims to propel the implementation of equitable autism research, enhance standardization within and between studies, and boost transparency and dissemination of findings. In addition, the inclusion of a contact registry that study participants can opt into creates the base for a robust participant pool. As such, researchers can leverage the platform to identify, reach, and distribute electronic materials to a greater proportion of potential participants who likely fall within their eligibility criteria. By incorporating practices that promote effective communication between researchers and participants, the ICR can facilitate research that is both considerate of and a benefit to autistic people.
ISSN:19393806
19393792
DOI:10.1002/aur.3167